Family Sells Belongings to Afford Son's Medication
A family has reported selling some of their belongings to cover the cost of medication for their nine-month-old son.
Mother Kiely Luscombe expressed feelings of being "let down" and "lost" after learning that the medicine required for Arnold would cost £312.70 per bottle, lasting approximately one month, as it is not funded on prescription in Guernsey.
"I just feel lost. My partner and I have tried so much and we just feel we're at an end of a road and we're not sure who to turn to."
The Committee for Health and Social Care has been contacted for comment.
Medical Background and Diagnosis
Arnold began experiencing vomiting and stomach issues at just three weeks old. In October 2025, he was urgently taken to Southampton Hospital for treatment.
He was diagnosed with dysmotility and hypermotility, disorders affecting the digestive system that cause difficulty in keeping food down and maintaining regular bowel movements.
"He was having to be held 24-7 because he was in so much pain. His tummy was so tight it was hurting; he was constantly arching his back," Luscombe said.
Arnold was prescribed Mebeverine at Southampton General Hospital before the family returned to Guernsey.
Initially, the medication helped, but its effectiveness diminished over time. The family was advised to increase the dosage, which led to a faster depletion of the supply.
"Nobody told us that his medication was going to cost quite as much... We managed to get a reduced price for Arnold's first medication at £205.50. But, going forward each month, Arnold's medication is now going to cost us £312.70," she said.
Arnold requires the oral solution form of the medication, which is not funded by the States of Guernsey.
Financial Strain and Impact on Family
Luscombe detailed the financial burden the family faces.
"We're looking at going through one bottle a month, so we're looking at £3,500 a year.
We've got four children, six children between us, so it's just not feasible," Luscombe said.
The family was advised to reduce Arnold's dosages to extend the medication supply, but this led to a decline in his health.
"His tummy swelled, he was vomiting, he couldn't go to the toilet, he was crying. He just didn't have a quality of life that he should have.
I don't understand why it should cost so much money just to give him that quality of life."
Despite sharing the same chronic illness, Arnold's father has returned to work while Luscombe cares for their son.
"I've never seen my children go without, so, no matter what it took, my partner and I would go to the ends of the earth to get what we need to get."
Luscombe hopes to receive disability allowance in the future but is concerned about the wait time.
"It could take months and I'm sat thinking: 'What do I do for those months? Who do we talk to? Who do we ask? Who will actually listen?'
I feel so let down. I feel lost. My partner and I are fighting and fighting and fighting, but we just seem to be hitting brick walls every turn.
Nobody deserves to be refused medication because you can't afford it."
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